Ss Disability Denial

[ashleighheath]

Has anyone that has initially been denied their SS disability application been successful in the "reconsideration" process?

I just received my initial denial last week. Of course, I am a little overwhelmed by the reconsideration process (60 day deadline) but want to give it a go without an attorney realizing that while I thought I was pretty thorough in my initial claim, based on the letter that I received from SS, I obviously did not make it abundantly clear that I at this time I am not employable given the limitations of my POTS.

(On my best days, I have only a couple of hours per day of modest, modest functional time that is light cooking, paying bills, going to the doctor, etc. I am only to wash my hair (and not dry it) once a week, at most. I frequently have horrible migraines that affect me for three days. You all know the POTS story. What kind of employer would put up with that on a week-to-week basis, not to mention on a day-to-day basis allow for frequent breaks every 20-30 minutes after any kind of exertion, and allow for frequent meal breaks and the rest required afterwards?)

Do you have any specific recommendations for things to include? I am going to request an appointment with the "vocational rehabilitation services office" because I would love to know what kind of significant work the SS office has in mind for me. And perhaps this will strengthen my application? I was expecting some sort of vocational assessment as part of the initial application, but that never happened.

I have read that attorneys only can take a max-cap of fees, so hiring an attorney might be a good option at some part of the appeals process if my application is not approved "soon"; however, every little bit counts so I hesitate to hire an attorney if there is any chance I can petition for these rights on my own. On the other hand, I hate to lose the whole process if I really need an attorney.

Any feedback is greatly appreciated. THANK YOU!

[MightyMouse]

Many people here have been denied on the first time through... some have been denied more than once.

Nina

[potsgirl]

This topic has come up frequently here, so I would do a 'search' for "disability". I was turned down twice, got a lawyer and went to court, and then was immediately approved. Many suggestions are out there waiting for you. DON'T give up. I got disability under "severe hypotensive intolerance". I think it's difficult sometimes to get it under "POTS" since it's not really an approved federal category of disability that I know of....

[Simmy]

I was denied a couple of weeks ago myself and hired an attorney. If I win he'll get 25% of any retroactive payments, with a maximum of $6,000. The second "reconsideration" stage is another person at the same office, who had no involvement in your initial denial, looking over your original claim along with any new evidence you may submit.

As I understand it, it's rare that someone gets approved at this second stage, but with the right evidence it could happen. My lawyer and I are looking forward to the third stage, the appeal, where I'll get to physically show the judge how my heartrate jumps 40-60bpm in seconds when I stand up. He's confident that will win the case.

You can try the reconsideration stage on your own and if you win you get to keep that 25%, but your odds are low. You could then hire a lawyer for the appeal. I decided I was willing to give up that chunk-o-change to increase my odds at this second stage, and I'm also tired of having to deal with social security and my illness at the same time.

The greatest difficulty we face in getting approved is the fact that POTS is not on their 'approved diseases' list, but many of our symptoms are, like hypotension and arrhythmias, so that's what needs to be highlighted.

[ashleighheath]

Many people here have been denied on the first time through... some have been denied more than once.

Nina

Thanks for all the replies and support.

It's my understanding that it's the norm that most applications (and appeals) are denied. I've found some other forum strings with tidbits of tips. Just hoping for some gems of advice.

In looking at the medical conditions it seems that there are two categories for which POTS may be approved:

NEUROLOGICAL 11.14 for peripheral neuropathies

CARDIOLOGICAL 4. 05 Recurrent arrhythmias

While I want to focus on symptoms, I wonder if it's just as important to argue within the terms of their accepted world view?

It is an exhausting process to tackle, on top of managing the POTS. Thankfully my husband is so supportive, too. He made a most kind comment. He said that more than just the money, it was a disappointment to him because it he had hoped for me it would an acceptance would give some validation to my struggles. (Of course, I was braced for the denial, as is typical for any SSDI application.) I now have a wonderful and supportive POTS specialist, but it's been a long haul in getting the right treatment and respect from the medical community. And it took some time for my husband to understand the scope of POTS.

Again, thanks all for the comments and tips. Please keep them coming! It's helpful and hopefully it will help the next readers, too.

[Brye]

Sorry you weren't approved on the 1st attempt. I have a form a lawyer friend had my doctors fill out that I submitted with my original request. I would be happy to send it to you. I think it helped give them an idea of my true limitations. My primary diagnosis is POTS. High risk for syncope was noted by several doctors and I think that may have helped as well. I was approved the 1st time but I was prepared to hire a lawyer if it was denied. If you want to look at the form and see if it may help PM me your address and I'll copy it and mail it to you.

Good luck!

Brye

[MightyMouse]

Do you also have syncope? Any related diagnoses? Many with POTS have additional diagnoses that are related, such as GI problems, migraines, joint problems, etc. Having those things documented will help, along with documentation of your functional limitations. There's an article you can search for here on the site about quality of life being similar to those with heart failure for those with POTS.

Nina

[janiedelite]

I recently replied to someone else's question about SSDI. I echo the suggestion to do a search on "disability." I copied and pasted what I had posted to the other DINET member, so some of this might not apply to you. But I was successful winning SSDI and I wanted to share how I did it. After reviewing over 100 pages of medical records, personal records, and journal articles on POTS, the judge found me disabled. But she knew I wouldn't fit in the categories allotted for disability. I do have a diagnosis of small fiber neuropathy so she put me in the "peripheral neuropathy" category:

I was denied the first two times because I initially was disabled after a car accident that required two hip surgeries and 100 PT visits over 2 years. SSDI said that I should still be able to work with 3 working extremities . I've been on long-term disability insurance and they hired a company whose job it is to try to get the LTD clients on SSDI. Unfortunately, they never properly requested all of my dr's records so the SSDI reviewers never got the full picture of my disabilities. I ended up starting to keep a copy of all my records myself. By the time I was denied twice and assigned an attorney, I just faxed all my records and the other info I mentioned above. I won my case based on those records. I have to get reviewed again in a couple years because I'm young (36). My mom has cancer and is 61 and she has permanent disability.

As for me, I have some degree of symptoms and disability every day. Some days I function nearly normally and some days I have so much pain and fatigue I can hardly move. Most days are in the middle somewhere. With SSDI, you have to prove you can't do any type of full-time work.

Unfortunately, it really is helpful to have the doctors who regularly manage your illness back you up. They will have to fill out paperwork documenting your disability. If you are on LTD, your LTD insurer should file the paperwork for you (although you'll still need your doctor to document your disability on SSDI's paperwork). I was denied the first 2 times and had to have a hearing. My LTD company contracts with GenEx, which is a company that gets people on SSDI. They provided an attorney, although the attorney admitted I did all of the legwork for her. Here are some things that helped me win my SSDI:

- I kept a journal of my symptoms for nearly 2 years prior to my hearing.

- I included professional medical journal articles about POTS and disability.

- I went to Mayo for a diagnosis. Going to a well-know medical center will earn you a lot of validation with those reviewing your case.

- I've been blessed with doctors who believe me, and I do my best to comply with their suggestions, even when I'm not sure if it will work out. I always try what they suggest, sometimes it works, usually it doesn't. This helped because I had to send all my medical records for the past few years, from over a dozen doctors, and they all spoke favorably of my efforts to get better. I know this stinks because sometimes doctors make us look like malingerers. I went to one doctor like that, never went back, and all my other doctors' testimony outweighed his. I only say this because my SSDI judge remarked several times how favorably my doctors spoke of me and how that really helped my case. She said many patients applying for disability are non-compliant, don't follow up with their docs, no-show appointments, and she said this really counts against them.

- I went to over a dozen doctors because most of them didn't know what to do for me. I stuck with those who want to help me, even if they admit they're not experts.

- I documented every doctor's visit, PT visit, therapist visit, phonecall, etc. The judge commented that no one could work a full-time job and be at all these appointments.

- I included a short paper titled "A Day in My Life" and detailed how I function during a 24-hr period, why I do things differently, what helps, what hurts, etc. If you apply for SSDI on your own, include as much about your illness as possible because those people reviewing your case will only know what you tell them. The forms you have to fill out don't give a very good picture of how we actually function.

You will automatically be awarded Medicare once you've met SSDI's definition of disability for 2 years. But you don't have to accept Medicare, you have to prove you have your own private insurance and they'll drop you if you want. I kept part A (inpatient), because it's free, but declined part B (testing and dr's visits).

It's tough getting disability payments because you KNOW that you're sick and not faking, but it seems like everyone wants you to prove it. Keep pushing for yourself because no one else will be your advocate for you. I felt like it was my full-time job just keeping track of my records and documenting everything. But it was worth it because my LTD will stop paying in 2012 and I'll still have my SSDI. I've heard it's much easier to renew your SSDI when your review comes up than it was to get on it in the first place. Keep fighting for yourself!

[megan2]

I was denied the first time through. I was approved in the reconsideration phase. I did get a lawyer, although I'm not sure he did much other than show SS that I was serious about getting this approved and wasn't going to give up. My lawyer didn't expect to win during reconsideration (he told me only 10% are approved) so I guess I was lucky. The lawyer only gets back pay fees, which to me was I rather pay him 25% of my back pay then fight this forever and have to deal with the headache, and possibly not get approved. You won't have to pay any money out of pocket for the lawyer. SS sent me to see their doctor (twice), their psychologist and do some tests for them (which were pointless, for example, why do I need a hand x-ray??)

When I first filed, it was "just" under "POTS, CVS" by the time I completed reconsideration (a year later), I also had EDS, myopathy, and suspected mitochondrial disorder. I am wheelchair bound, and am unable to write (this was a big selling point) due to severe muscle weakness.

[potsgirl]

I think a key element for me was to show that I NEVER KNEW FROM DAY to DAY if I could work or not. We never know when we wake up in the morning if we'll be able to make it to work or not, whether we'll have arrythmias or syncopeor numbing fatigue, or numerous other issues. It's a major problem for us POTSies that we can never count on anything. I couldn't say that I could make it 3/5 days of work, or 1/5. I think this was an important point for me, and it's one of my greatest frustrations. Make sure they know that you cannot count on being there on any given day, and have your doctor include in your statements that you are simply "incapable of working a full-time work week in any profession" (fed statement). I also used my wheelchair that day.

Good luck, and I'd definitely get a lawyer. I have $21K of backpay coming, and she took about $5k of that. Worth it!

Cheers,

Jana

[ashleighheath]

Thanks everybody for all of the ongoing support and specific recommendations. Your knowledge is power.